New here. Recently diagnosed with polymyalgia.

Thanks Eileen, The link is brilliant. Looks like I'm going to be busy reading later! The original bloods done were: Thyroid, B12, Vit D, fasting glucose, oestrogen and a couple of inflammatory markers. All came back good. His diagnosis came from my symptoms: pelvic cage, shoulders, scalp,severe headache, fatigue, weight gain (but I think that is because I was too afraid to move as every time I did I hurt) He did say he wanted to take a stab in the dark with Pred and if I responded quickly he was going with Poly. I did query the amount he wanted me to reduce by but he said I hadn't been on the higher dose long enough for it to be a problem. But it makes perfect sense what you say about other causes responding to such a high dose especially as the pain that has returned is, as well as the above, also wrists and ankles. There maybe a couple of things concurrently. A good discussion with him needed I think. I have great faith in him despite this hiccup and I do like the way he allows me to take responsibilty myself. So I know he won't get upset when I tell him I've varied the dose.

 

Karen your doctor may have given you the high dose because he suspected GCA as you say you had tender scalp and bad headache. In that case you would need a much higher dose of pred, so he did the right thing in that case.

As ptolemy says, he may have suspected GCA since you had headache and scalp pain which are both more GCA than PMR, PMR itself can be a sign of GCA so it is a perfectly reasonable thing to do to start you on a higher dose.

However - IF he suspected GCA then he shouldn't be reducing you as fast as this. Did the headache return at 20mg? There is a lot of information about managing GCA in that Bristol paper too and maybe your discussion with him should be based on that paper. Weight LOSS is normally regarded as a sign of PMR and GCA, not weight gain  - though I put on a fair bit of weight because of not being able to move.

There are other things that should have been ruled out too - but I imagine he did a full blood count for all the haematological things like white cell count, red cell count and haemaglobin? That would cover a lot of them.

He did mutter "temporal arteritis" but I was so busy throwing up with total pain, there was little chance of me taking note of anything he said. More reading up on GCA me thinks. Sad days when you have to do so much homework to ensure the docs know what they are doing.

In that case, if he thought that, he should have kept you at 40mg for at least a month or until all symptoms were properly controlled. Then he should have reduced the dose, preferably by not more than 5mg at a time, remaining at each dose for a month on the way down, to 20mg. However - given your problems with palpitations and stuff, if you were fine at 30mg then he should consider keeping you there for 2 or 3 months and only then reducing slowly.

Because of my belief in SLOW reduction I would say reduce 2.5mg at a time at the most and, again, remain at each dose for a month. No reduction should be more than 10% of the current dose - so by 20mg you are already down to 2mg at a time. From there 1mg is simpler and kinder to the patient.

Thank you, So my plan of action is as of yesterday. Back up to 30mg. (Feeling much better in every way this morning.) Good chat with doc on Tuesday to tell him what I've done and why, Tell him I want to stay on 30mg for 2-3 months then taper off by 2.5mg at a time, remaining at each subsequent dose for a month providing everything is good. If I get a blip after reducing I will go back up to the previous dose and try again once stable for a month. Going to need a mix of different tablet doses and a daily diary to keep me sane I think!

 

A diary with dose and status is always very useful for reporting back to your medics - then they can see how lowered doses are reflected by symptoms returning. 

Glad to hear you already feel better.

Just a quick update.. to everyone who has taken the time to share their experience and advice with me. It turned out my GP was on an unexpected leave. The GP I spoke with today said exactly what you guys have been saying. She wants me to stay on 30mg for one month. If all is stable by then I reduce by 10% of total dose remaining at that level for a month before continuing downwards. She's advised on the vitamin suppliments, low carb diet and gentle exercise providing it does not exacerbate any pain. She did not feel 30mg a day to be excessive considering the length of time I have had symptoms and also the head pain I had at diagnosis.  She was aware of The Bristol Paper. It maybe the way to go that I see her in future for my ongoing treatment.

I'd like to thank you all for your guidance and support and wish you all a speedy recovery. xx 

I would definitely stick with her - she sounds a brilliant find and I know a lot of people who would give their eye-teeth to be under her! 

Now you've found us don't run away - we're a nosey lot and like to know how things go!

 I'll  be around Eileen, it's such a comfort being part of a community who are or have been "there" and understand.

 

Karen, you must be having an hallucination, you can't get a GP as good as that! I am very jealous.

eileen i have a question , what blood test do i ask for to find out about the antibodies i might or might not have re being imuneised against such things as whooping cough measles and such , i have new born great grandkids still coming too and the mums want me vacinated before they bring them near me , , i dont think i can have the tetnus injection as i had a bad reaction from my last one ,dr was called in and i was given an antidote to that one , he did say he didnt know what they would do if i needed another one , the reaction was like getting tetnis , i was in so much pain and every nerve in my body was screaming , , now i first had my imunisation when i was 5 years old , but after that i got measles and whooping cough together , , then later all the other childhood deseases , , mumps when i was 18 and was sterile for 2 years , so maybe i should tell my dr.all this hey lol just thought it would save time if i could ask him for a certain blood test first , by the way im doing fine and not on prednisone now for a year , last august ,but pain at night i have they say is just arthritus and i get moving to get mobile through the day , trying to over come that by not eating certain foods , , thanks for your helpful sugestions too i look for your answers to others on this site , 

You ask excatly the same question you have just asked me. But I think your grandchildren are being a bit OTT. Newborns aren't vaccinated immediately with MMR because they carry antibodies transferred in utero from the mother and that would wipe out the vaccine before it could do anything. 

I assume too that if you are expecting great grandchildren you are probably older than me and have had them all - in fact you have said you have:

"Why are people born before 1957 exempt from receiving MMR vaccine?

People born before 1957 lived through several years of epidemic measles before the first measles vaccine was licensed. As a result, these people are very likely to have had the measles disease. Surveys suggest that 95% to 98% of those born before 1957 are immune to measles. Note: The "1957 rule" does not apply to women of childbearing age who could become pregnant. (Because rubella can occur in some people born before 1957 and because congenital rubella and congenital rubella syndrome can occur in the offspring of women infected with rubella virus during pregnancy, birth before 1957 is not acceptable evidence of rubella immunity for women who could become pregnant.)"

You probably DO need whooping cough vaccine as the immunity fades over a period of 4 to 20 years - but it is normally a triple shot including tetanus and that is a no-no for you. There are single ones I think though. That is also a question you have to ask about any vaccine - whatever it was that triggered your reaction to the tetanus shot may be present in any other vaccine. All these vaccines are live ones - if you were still on pred you couldn't have them at all. 

However, if these girls are refusing to let YOU near their babies I hope they are also not intending taking them outside at all - the illnesses are spread by droplets after a sneeze for example. They can't ask everyone they meet if they have had their shots! And that is exactly why they have been offered vaccinations themselves during pregnancy - the immunity is transferred to the baby via the placenta and lasts until it gets its own shots at 2 months or whenever it is. So the first question is: "Did you have your shots during pregnancy?". If not - they are as great a risk to their children as you are. Immunity also takes a bit of time to develop - it isn't instantaneous.

Oh, and by the way - how many tetanus shots have you had in life? There is now felt to be a maximum number your body can cope with. I've reached my maximum and won't need another. So maybe your doctor doesn't need to worry too much.

thanks Eileen ,i will see my doc anyway and talk it over with him anyway , im now 86 , born in july ,1929 , i was 5 when i was vacinated , i later still got measles and whooping cough ,together , , then all the other childhood illnesses , chicken pox , rubella , called germain measles , then mumps when i was 18 , , but i had the tetnus needle because i had a bad cut and it was in the dirt , so i maybe didnt need that injection and thats why i got the reaction , anyway , i think its the grand parents that are requested to get a booster , i have so far told my grand kids i dont want to come near them till they are imunised lol i now have 10 great grand kids with another one coming soon , 18 grand kids , from my 6 children , , i will see what my dr, says ,if there is a blood test to show if im imune or not , i will post what i find out anyway , i just wish i could chat on line with my few living cousins ,or school friends , they just wont learn this wonderful way to keep intouch lol im also on facebook and see what my kids are up to lol thanks again  

Well done you! I use Facebook too, it's the only way to know what my daughters who live in the UK still are up to and I have some friends of my age too. Bet the younger members of your family think they have a really cool gran/great gran! A lot of my peers won't use the internet to communicate either - they seem to think it's an invention of the devil! 

I think the vaccination you had at 5, in the 1930s may have been for diphtheria and/or tetanus TB and smallpox - measles vaccine was only developed in the 1950s and the rest far later. I was vaccinated against polio in the late 1950s and that was the first vaccine I had. 

Funny though - my concern would be for YOU catching something from the kids not them from you!

yes lol i too think it was a diptherior immunisation , i too later had polio drop , i was about 8 when polio was raging here my cousin died from that , i dont thinkthe mums kept any records, either ,i do know i had all my children done but i too didnt keep records , we just went along when the drs said , or scools , oh i dont know lol anyway i will see if i have any immunity ,probably none at all after this so and so polymialgia lol oooohhhhh